"I Thought I Had Alzheimers, But It Was Something Else"

DEMENTIA IS AS NEURO IMPAIRMENT, including memory problems, that interferes with the activities of daily life and eventually prevents sufferers from being able to live on their own. And while there are several different diseases and conditions that can cause cognitive impairment, Alzheimer's is by far the most common form of dementia, accounting for 60 to 80% of cases.

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An estimated 5 million Americans are currently living with Alzheimer's, and the number is expected to triple over the next 20 years as the population ages. But unlike diseases such as diabetes and cancer, Alzheimer's has no single, definitive medical test that can lead to a diagnosis.

Complicating the issue is the fact that many medical conditions besides Alzheimer's can cause brain fog and memory loss. And while there is no cure for Alzheimer's, there are several treatable conditions that mimic the disease well enough to sometimes fool doctors. In fact, it's estimated that up to 9% of patients with dementia-like symptoms are suffering from reversible conditions. These three people recount how they learned this fact the hard way.

DEFINED COGNITIVE

AMY ROSE, 46 My symptoms started in the fall of 2008, when I was 36 years old. After a visit to my father in Arkansas, I came down with what I thought was a summer flu--fever, achy muscles, everything seemed really off. Soon after that, my brain started going haywire.

One day, I was standing in the middle of the grocery store with my 9-year-old daughter, Sophia, and all of a sudden I had no idea where I was. Sophia said, "Mommy, can I use your phone?" and she called my husband to pick us up. Another time, I was driving to pick her up from her bus stop, and when I approached a stoplight, I suddenly had no idea what the colors meant. I was talking out loud to myself, saying, "Green means go, red means stop," trying to remember the simplest things. But the worst was when I forgot my daughter's name. I was staring at her face and saying to myself, Oh my God, what is she called? I just couldn't remember. I called her by my husband's name.

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I saw so many doctors. My primary care physician thought I had mononucleosis; a psychologist thought I had anxiety and depression. I also saw a rheumatologist and an endocrinologist. None of them could put together my physical symptoms and my cognitive changes.

Then I went to see another doctor, who thought I had lupus. He put me on hydroxychloroquine (Plaquenil) and another medication that he said would regulate my immune system, but they just made me feel horrible. I couldn't move, I had bone pain and vision problems, and I was exhausted. When I went back to see him 2 months later and told him the medications weren't working, the doctor told me he believed I had early-onset Alzheimer's disease. I was 41 years old. Driving home from that visit, I asked my daughter to put her headphones on so I could sob without her hearing me.

"I COULDN'T REMEMBER MY DAUGHTER'S NAME."

The doctor put me on an Alzheimer's drug called memantine (Namenda), but it had no effect at all. I kept thinking that maybe I didn't have Alzheimer's and I should keep looking. No one in my family had early-onset Alzheimer's, and I knew the early form is usually genetic. I went to yet another doctor, who thought I had mycoplasma, a bacterial infection. He put me on antibiotics, but I still didn't feel better. In fact, my symptoms only got worse.

THE TURNING POINT: I was researching my symptoms online, and Lyme disease kept coming up. So I decided to see one more doctor, a well-respected Lyme disease specialist in La Jolla, CA--the 26th doctor I'd seen since I got sick.

Finally, 8 years after that day in the grocery store, I got a blood test that led to the right diagnosis: I had Lyme disease plus several coinfections, including bartonellosis and babesiosis, another tick-borne disease. I'd been tested for Lyme very early on, but, as I later found out, the test has a very high rate of false negatives. I had no idea Lyme could be so destructive, but once the bacterial infection gets to your brain, it can be very harmful and difficult to treat.

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Since I'd already been on prescription antibiotics for 8 months, I chose to take a natural approach and try herbal antibiotics and a few other supplements with my doctor's OK; thankfully, they're working wonderfully. I've also changed my diet to eliminate things that can feed the bacteria, like alcohol and refined sugar.

I was very weak, but I'm so much better now. My memory has come back. I'm able to read, watch movies, and share my passion for art, travel, photography, and music with my daughter and my friends again. I'm starting to see glimpses of my true self.

Hudson Peel had seizures and trouble walking, in addition to hallucinations.

Callie Lipkin

HUDSON PEEL, 81

When I retired in 2001, I planned to enjoy my time with my wife and read some of the 2,000 books in my home library. But in 2009, I was diagnosed with diabetes, and a couple of years after that, I started having trouble walking. I felt like my body was giving out, but no one knew why. I had to ask my son Mark to move in and help take care of me because it became too much for my wife to handle on her own.

I also started having memory problems and hallucinations. The first time Mark noticed something was wrong was when he took me to the cash machine to withdraw money. When we got there, I had no idea why I was there or what my PIN was. Not long after that, I started imagining soldiers outside on my lawn, and I thought it was snowing in the middle of the summer. One day, I got really upset because I wanted to go home--but I was sitting in my living room. Mark had to put me in the car and drive me around the block and show me the number on my door to prove to me that I was back at my own house.

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"IT TOOK 3 YEARS AND MANY DOCTORS BEFORE I FOUND OUT WHAT WAS REALLY WRONG WITH ME."

I had to go to the hospital often because, in addition to the diabetes, confusion, memory failure, and walking problems, I started having seizures. At one point, several of the doctors at the hospital told my son they thought I had Parkinson's or Alzheimer's disease and should see a neurologist to find out what stage of the disease I was in. But it took 3 more years and visits to four different neurologists before I found out what was really wrong with me.

THE TURNING POINT: It was a neurologist in North Haven, CT, who changed my life. I was in a wheelchair when I met him, and he asked me to get out of the chair so he could watch me try to walk. He said, "I think I know what you have, and it's not Alzheimer's disease. I just want to do one more test." He scheduled a test that involved taking a sample of fluid from around my brain for analysis.

When he called me with the results, it was to say his suspicions were correct: I had normal pressure hydrocephalus--an excess of cerebrospinal fluid in the brain that causes balance and bladder problems, as well as memory and cognitive issues. I later learned that it's not uncommon for it to be mistaken for Alzheimer's, as both can be difficult to diagnose. When the doctor told me I needed an operation to create a hole in my skull and insert a shunt to drain the excess fluid, I wasn't even scared. I just wanted to get well. As soon as I woke up from the operation, I got out of bed and walked.

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My memory still isn't perfect--after all, I just turned 81! But I don't get confused about where I am or have hallucinations. My son still lives with us, but he was able to get a part-time job instead of having to take care of me full-time. The best thing, though, is that before I had the operation, I couldn't read any of the books in my library, and now I get up every morning and read.

WHAT ELSE COULD IT BE?

Besides Alzheimer's, there are other conditions that cause people to develop dementia or dementia-like symptoms. Some, like vascular dementia and dementia with Lewy bodies, have no cure. Others can be successfully treated or even reversed. In addition to the illnesses in the cases here (Lyme disease, normal pressure hydrocephalus, and thyroid disorder), here are a few more treatable causes of symptoms that appear to be dementia.

Depression People who are depressed often have trouble focusing and paying attention, which can lead to memory loss. Treating depression with therapy, medication, or a combination of both can help. (Here are 9 surprising depression symptoms you should know.)

A simple test --which more than a dozen doctors failed to perform--turned Miriam McCall's health around.

Callie Lipkin

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MIRIAM MCCALL, 69 About 3 years ago, I started to have all kinds of health problems, including aches and pains and trouble standing and walking. Worst of all, I was in a fog. I couldn't hold a conversation because I couldn't remember what I was saying or what anyone said to me. I got slower and slower. When the people who know me best would call me on the phone, I could hear them almost crying because I couldn't respond to a sentence. I have two children and six grandchildren, and they were frantic with worry. We went on a family vacation, and all I could do was sit in a chair and stare out the window.

"WITHIN 2 WEEKS OF STARTING THE MEDICATION, MY BRAIN FOG STARTED TO LIFT."

I'd been a clinical counselor for many years, often working with older people, so I knew what normal aging is and isn't. I was sure that I was developing Alzheimer's disease. One day, my mental issues got so bad that I sat at the table rocking and crying, saying, "If this is what my life will be like, I don't want to live."

I went to 17 different doctors for my various symptoms, including a psychotherapist, a cardiologist, a gastroenterologist, and a maxillofacial surgeon, and none of them could figure out what was wrong with me. I saw a neurologist who did some CT scans and MRIs, but nothing unusual came up. A couple of doctors told me to stop drinking (I don't drink), and a few even said it was all in my head.

THE TURNING POINT: My husband was so frustrated that my daughter persuaded him to call a functional medicine specialist for advice. The specialist listened to him describe my symptoms and then suggested that my doctor run some specific blood tests.

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When the results came in, it turned out that my thyroid had stopped working, causing the brain fog and memory loss. It was such a simple test, yet none of the other doctors had done it. I was prescribed Armour, a natural thyroid-hormone replacement derived from animal thyroid glands, plus a few other supplements.

Within 2 weeks of starting the medication, the pain was gone and my brain fog started to lift. Within 2 months, I was back to the person I had been before. My sense of humor returned, and I could play with my grandkids again. When I was sick, I would try to do a Sudoku puzzle on the computer, and it would take me forever to complete it. Now I can do one in 4 minutes. I feel better than I have in years.

THE ONLY WAY TO DIAGNOSE ALZHEIMER'S

While there's currently no cure for Alzheimer's, there are medications and behavioral therapies that can help patients and their families cope with the disease. Experts stress that early diagnosis is important because treatments are most likely to be effective when started early in the disease's progression.

1. KNOW THE SIGNS Most memory lapses are signs of normal aging. But the Alzheimer's Association flags these cognitive problems as reasons to see a specialist for an evaluation:

Memory loss that disrupts daily life, including forgetting just-learned information and important dates or events

Trouble following plans, such as cooking from a recipe or keeping track of monthly bills

Difficulty with tasks that were previously familiar, such as driving to work or playing a favorite game Losing track of time, days, or seasons

Forgetting where you are or how you got there

Using incorrect words or having trouble following conversations

Losing things because you put them in unusual places (for instance, putting keys in the oven)

Changes in mood and personality, such as becoming confused, suspicious, fearful, or anxious

2. TELL YOUR DOCTOR ABOUT ANY PHYSICAL CHANGES When physical symptoms such as unsteadiness or urinary incontinence begin before the onset of cognitive issues, it may be a sign that something other than Alzheimer's is responsible.

"I wouldn't expect an Alzheimer's patient to have problems with their bladder or walking," says Adam Mednick, a psychiatrist and neurologist in North Haven, CT, who treated Hudson Peel. Mednick says symptoms like those might indicate Parkinson's disease or normal pressure hydrocephalus, either of which can also cause symptoms of dementia: "it's important for a doctor to get a complete medical history."

3. FIND THE RIGHT SPECIALIST "Sometimes people come in with a diagnosis of Alzheimer's from a general practitioner or a neurologist who doesn't specialize in memory disorders," says Elise Caccappolo, an associate professor of neuropsychology at Columbia University Medical Center. "Seeing a doctor who isn't a specialist in aging and dementia or memory disorders leads to a lot of misdiagnoses."

Neurologists, psychiatrists, and psychologists who specialize in memory problems can help determine the correct cause of cognitive symptoms. "Specialists use the latest diagnostic tools, such as a PET scan or even a spinal tap," says Caccappolo. "We obtain as much data as possible in order to make the most accurate diagnosis possible."

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